Hope for Cyclic Vomiting Syndrome

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Philippa Bridge-Cook
Two days ago I helped my twelve year old daughter pack for two weeks of overnight camp. We followed the suggested packing list that the camp provided, and when we got near the bottom of the list I realized there was one important thing that was not there that she needed—her medication and supplements. My daughter has had cyclic vomiting syndrome (CVS) since she was two years old, a disease that causes her to have frequent episodes of severe nausea, vomiting, and abdominal pain.

She has bravely managed this debilitating disease for 10 years. She has been going to camp for four years already, and every year she has had a vomiting episode at camp—one year while she was out on a canoe trip, and one year starting early in the morning on the day she was supposed to leave. When she was younger she used to have episodes like clockwork every two months, and as she got older, her episodes became less predictable, and more responsive to events in her life such as stress, fatigue, or even excitement. She would sometimes have three episodes within one month, and other times go for as long as three months without an episode. On average she would have one to two episodes per month.

This year, for the first time, she has had only two episodes of vomiting in the last seven months. This dramatic change occurred after she started a new regimen of dietary supplements—L-carnitine and Coenzyme Q10. We decided to try using these supplements after learning about research that suggests that CVS may be caused partly or completely by mitochondrial dysfunction. More information about the connection between CVS and mitochondrial dysfunction can be found here. L-carnitine and Coenzyme Q10 assist the mitochondria with energy production and thus, help compensate for mitochondrial dysfunction and potentially improve symptoms in CVS patients. These supplements may also help improve symptoms in other disorders linked to mitochondrial dysfunction such as migraine, irritable bowel syndrome, fibromyalgia, and medication adverse reactions.

Results from small clinical studies on the use of these supplements for cyclic vomiting syndrome have been very promising. A retrospective chart review study found that using these two supplements, along with a dietary protocol of fasting avoidance (having three meals and three snacks per day), was able to decrease the occurrence of, or completely resolve, the CVS episodes in many patients. The supplements were also shown to be safe and well tolerated, with few side effects.

My daughter noticed an immediate improvement in her symptoms. She had almost daily morning nausea even when not having a vomiting episode, and this disappeared almost right away. She started asking for breakfast, when previously I’d always had to try to convince her to eat at least half a piece of toast. She now will often eat either three eggs and two pieces of toast, or a big plate of dinner leftovers for breakfast. She also has a better appetite throughout the day. I don’t think I ever heard her say the words “I’m hungry” until this past year, when she was 12 years old. Previously quite underweight, in the past 7 months she has literally gained as much weight as she gained in the previous 7 years.

The first 2 months on the supplements she had no vomiting episodes. Then she ran out of her supplements while my husband and I were away, and within 2 days she was having a vomiting episode. Then over the last 5 months she has had one more episode, after a period of extreme stress. This represents a huge decrease in episode frequency for her. When we got to packing her medications and supplements for camp, I packed her supplements with careful instructions for the doctor as to the dosage, and the fact that she has to take them every day to prevent episodes, as we saw earlier this year what happens when she stops them even briefly. I then started looking around the house for her Zofran pills (a strong prescription anti-emetic), which was what we would usually use to try to stop her vomiting when she was having an episode. I have always sent them to camp with the instructions that they are to be used if she starts vomiting. I couldn’t find the Zofran anywhere—it had been so long since we had needed it. I called the pharmacy, but they didn’t have any in stock. I found one emergency pill stashed in my purse and I packed that, but I have a feeling that this could be her first year enjoying camp with no interruptions due to illness.

Postscript: This article was published originally in July of 2014. We are happy to report that after years of suffering from CVS, Philippa’s daughter remains largely episode free with relapses only when she misses her supplements or changes her routine. For more on cyclic vomiting syndrome see the articles listed below. 

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46 Comments

  1. Dr. Bridge-Cook, I appreciate all your helpful information. I had the same question as David. Does it matter what kind of carnitine? Which is better Acetyl l-carnitine or just l-carnitine. I have also seen CO Q 10 with bio perine and was wondering if it is better to take a supplement with it or without.

  2. Hello I was just wondering if you can give me a good brand on the cq10 and the L carnitine I know that you have to be careful not all supplements are the same even though the company will tell you they are ,thank you!

    1. We have used different ones. They all seemed to work. If you go to a health food store with a knowledgeable staff, they could probably recommend good brands, or ask a naturopath.

  3. Hi , im so glad that I came across this page, at the moment we are still new to this CVS . my son starting vomiting bouts December 17 out of nowhere . after continuous blood test Sneckitn test and many trips to A+E due to blood in his vomit , he went for an Endoscopy where they suspected he had CVS so back to our GP and we have mainly controlled his symptoms via Beta Blockers daily. we have reduced them from 80Mg to 10Mg with good results . if my son does not take these he will vomit every day not so good when your studying for your A Levels. I wanted to see about the Co Enzyme 10 and L Carnitine and the dosage.
    your article has been so helpful as now my son realises he’s not alone and other people do manage to control this horrible condition . Any advice is welcome

    1. It is a really awful condition to have. I’m sorry your son is suffering! My daughter has now been free of serious episodes since January 2017! She still gets occasional nausea.

      The dosing of supplements is based on his weight. This paper describes the dosages, but you should check them with a doctor to make sure that they will be ok for your son: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/. The doses described in the paper are:

      Co-enzyme Q10: Participants were treated with co-enzyme Q10 (ubiquinone) in liquid or gel capsule form (from a variety of brands) at a starting dose of 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller.

      • L-carnitine: Participants were treated with Carnitor brand or generics at a starting dose of 100 mg/kg/day divided BID, or 2 grams twice a day, whichever is smaller.

  4. Hello, My six year old daughter cycles every 52-57 days since Dec. 2016. She is hospitalized every time for 3 to 4 nights for iv anti nausea with Pepcid. I would love to try coQ10 & L Carnitine. She weighs 41 lbs. What would be a correct/safe dosage?
    Thank you,

    1. Check with your doctor or a naturopath to see if these supplements would be a good option for her. If they are not familiar with the treatment, you could print out the medical journal article.

      This paper describes the dosages: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/. The doses described in the paper are:

      Co-enzyme Q10: Participants were treated with co-enzyme Q10 (ubiquinone) in liquid or gel capsule form (from a variety of brands) at a starting dose of 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller. (so for your daughter, 200 mg twice a day)

      • L-carnitine: Participants were treated with Carnitor brand or generics at a starting dose of 100 mg/kg/day divided BID, or 2 grams twice a day, whichever is smaller. (for your daughter, 2 grams twice a day)

  5. I don’t mean to be rude but those supplements DO NOT work for everyone that has CVS. In fact, for me, as an adult sufferer at 43 yrs old, who was forced into a hysterectomy in 08′ because my symptoms were so bad, it makes things so much worse for me.

    1. No treatment is 100% effective for everyone. In the study of these supplements, a few people benefited from the addition of more traditional CVS medications. I’m sorry to hear that you’ve had trouble finding a treatment that works for you.

  6. My 8 year old has CVS and her frequency of episodes have increased to every 4-6 weeks. Her doctor approved q10 and L-carnitine supplements. Which name brand do you go with? Walgreens, GNC okay?

    1. I am not sure–I’m not aware of any studies looking at the effect of CoQ10 alone, so I don’t know how effective it would be. I think it is worth a try though.

  7. My 29-year old daughter has been suffering with CVS for over 3 years. She had to be admitted to the hospital at least 8 times because of dehydration, since she wasn’t even able to sip water or take ice chips because it would cause stomach pain and vomiting. She also has IBS, so I was wondering if this could have anything to do with the CVS. I am so glad I stumbled on this site and hope it will be of help to my daughter as well as so many other people who suffer from this debilitating condition.

    1. Some people with CVS have lower GI symptoms as well (such as diarrhea). So those symptoms may be related to her CVS, but it could also be something separate. I hope you have a good GI doctor. Not that many adult GIs really know a lot about CVS.

  8. Thank you so much for sharing your story
    My partner has been suffering with adult CVS for three years now and was diagnosed two years ago.

    After a really bad few weeks with him, I decided to give these supplements a go. Now its early days but we are now four days into using them and he hasn’t been this well for ages. The second day he had no nausea, no pain and no cramps. He has a little pain over the past two days, but I think he got a bit confident and did too much (carrying in a dishwasher and plumbing it in)

    I’m trying not to get to confident just yet but its like he has found himself again. We are just going to take each day as it comes.

  9. Dear Dr Bridge-Cook
    My daughter has been suffering from cvs for the past year and half. She is 13 years old. I read about the the two supplements you used to help your daughter. Where can I get them and how much of a dosage can she receive. At her last emergency hospital visit on March 31 she weighed in at 45.5 kg. Currently we are waiting to see a GI specialist but you can only imagine how long that wait can be. At first her pediatrion was convinced that this is an axiety issue and referred her to a physiatrist. After a year with her she was convinced that she had CVS. When I have discussed the possibility of CVS to the emergency doctors and her pediatrtion they sort of agree but seem unaware of what to do for her in treatment wise. Please help. She has missed so many days of school and I am worried about her physically (lack of eating and losing weight). Academically and socially.
    Thank you
    Nancy

    1. Hi Nancy, You can get the supplements at a health food store. This research article has suggested dosing in it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/. You can print it out and show it to your pediatrician. According to that article, the dose for a 45 kg person would be 100 mg of co Q10 morning and night, and 2 grams (2000 mg)of L-carnitine twice a day. I would suggest discussing this potential dosing with your MD or ND in case there is something particular in your child’s medical history that is relevant.

      I hope you will have some success with it. My daughter gained 20 pounds in the first year she was taking the supplements. She was always extremely underweight. She had chronic nausea even when not in an episode, and that has gone away now.

      Did your daughter’s episodes start with puberty?

      1. Thanks for getting back to me. Yes. This started about a year or ago. She has had a few episodes since last March 2015. She Had a major one back before school started. Then she was fine until this past few weeks. She had one that lasted about five days and currently she is in one now and this is day 6. She hasn’t gotten her period yet. Not sure if this could be hormonal. It’s frustrating to her and our family. She is an athlete and plays compatative soccer and is a well rounded student at school. She puts it if pressure on herself and we try to tell her it’s ok to let go sometimes. Through therapy we hope she will learn the skills required. But I really would like to start her on this at least if it works if can give her a boost to recovery. She barely eats once she is done the vomiting. In the past she has lost a lot of weight and now I can see it again. I was wondering who you spoke to to get the green light to start the supplements for your daughter?

        1. In some cases it can be exacerbated by hormones. It is a difficult age to begin with, and then having an illness on top of it adds another layer of complication. Our pediatrician was the one who told us he was ok with us trying the supplements.

  10. My daughter is 10 and has CVS/abdominal migraines since age 5. Tried compazine, zofran, and other traditional meds with no success. Have read promising things about coQ10 and L-carnitine but also lots of differences on dosing. She is 62 lbs. What dose would you advise and what brands are best for each?

    1. Hi Lisette,

      The dosing I used was from a study by Dr. Boles:

      “Co-enzyme Q10: Participants were treated with co-enzyme Q10 (ubiquinone) in liquid or gel capsule form (from a variety of brands) at a starting dose of 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller.

      • L-carnitine: Participants were treated with Carnitor brand or generics at a starting dose of 100 mg/kg/day divided BID, or 2 grams twice a day, whichever is smaller.”

      Your daughter is 28 kg, so according to this, the co Q10 dose would be 200 mg (100 mg in the morning, 100 in the evening), and the L-carnitine dose would be 2 grams twice a day. My daughter did well with these doses, which her pediatrician approved. She had a brief return of episodes during a period of stress, and her pediatrician suggested we increase the dose, but before I got around to trying that she was better again.

      I would check with your MD or ND. You can print out this study and show them the dosing that was used. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/. It is in the methods section. For some children amitryptiline also needed to be added, and you would need to work with a MD for that. I hope it helps.

      1. Thank you for your help! I actually met with my daughter’s pediatrician today to discuss. It was clear she was extremely skeptical of any supplements and was not willing to offer me any advice. Same goes for my GI that I meet with a week ago. He wants her to try Periactin, but I’m no so sure. What are your thoughts on that medication to treat CVS?

        Thanks again for the guidance. I am very hopeful this can improve my child’s quality of life.

        1. Hi Lisette, I really don’t know much about periactin other than that some people do use it. For myself, I prefer to try natural things first, and then if necessary, go to medication. That is disappointing that your doctors aren’t open to the idea of trying the supplements. If you are on Facebook, you can try asking some questions in this Facebook group for parents of children with CVS: https://www.facebook.com/groups/176313902555546/. They are a knowledgeable group, and some there use the supplements, and some use medications. You can hear about people’s experiences with the various approaches.

  11. My daughter is 3.5 and started vomiting out of the blue on a pretty regular patter of every 3 weeks. I took her by the third episode to see the Pediatrician who quickly diagnosed her with CVS, but said there was nothing I could do but chart her activity, food and stressors. My husband and I have done this diligently since December, and the CVS continues (twice more since my daughter’s Doctor visit), the last of which took place last night. It is always in the middle of the night, and my daughter starts off by asking for a drink of water, then the vomiting begins and lasts for 3 hours – the she is right as rain. My question is whether you think giving increments of liquid Advil may be helpful to catch the nausea as it is a form of an abdominal migraine or if this would be futile. I would ask ask if you think I should take the COQ10 and Carnitine to my Pediatrician’s attention. I am wondering why it wasn’t an option or is my daughter to small to take this medication (she will be 4 in April). Thank you for any assistance in regards to this and I really appreciated your article. Having charted my daughter’s intake, output and activity and sleep and stressors – I am left empty – wondering what is triggering these episodes? I just want her to be able to manage and feel terribly when she is so sick for those three hours. Thank you.

    1. Hi Melissa,

      Some kids are “calendar kids” and they have episodes more on a schedule, as opposed to having triggers. My daughter started out like this and then when she was older she started having triggers. You could try the Advil. That always made my daughter throw up more–it is a stomach irritant especially on an empty stomach. You could also ask your doctor about Zofran–it is an anti-emetic drug given to chemotherapy patients to prevent vomiting. I have used it with some success with my daughter, although it doesn’t always work. I would also ask about the CoQ10 and Carnitine–your doctor may not be aware of their use for CVS because they are dietary supplements, not drugs. If you look at my article about cyclic vomiting syndrome and mitochondrial dysfunction (linked at the bottom of this article) you may find some information that would be useful to your doctor. I know as a mom that it is terrible to watch your daughter endure this–I hope you can help her find some relief soon.

      1. Thank you so much for the reply. I just have a question as I have been researching Mitochondrial dysfunction and will pursue testing of this for my daughter, although I have read the tests may indicate no signs of dysfunction where one indeed exists. I would like to know if there are any side effects to giving my daughter the CoQ10 and Carnitine (with the proper dosing and after having spoken to the Pediatrician)? Another area I thought may be a consideration is my daughter has food aversions to many textures, so her diet is restricted in some areas, but mostly calcium since she will no longer eat cheese, the one source she would eat. Could a calcium deficiency or other vitamin/mineral deficiency contribute to CVS? Thank you so much. Melissa

        1. In the small clinical study that was published, there were no reported side effects with the coQ10 or the L-carnitine. Here is the study if you want to read it: http://www.ncbi.nlm.nih.gov/pubmed/21846334. I haven’t seen any discussion of vitamin/mineral deficiencies specifically linked to CVS, but certainly vitamin or mineral deficiencies can contribute to nausea–this could be worth discussing with a MD or ND.

            1. I was reading that nausea and vomiting is a common side affect of l carnatine.

              Can they be taken during an episode ? On an empty stomach ?

              1. The dosing I used was from a study by Dr. Boles:
                “Co-enzyme Q10: Participants were treated with co-enzyme Q10 (ubiquinone) in liquid or gel capsule form (from a variety of brands) at a starting dose of 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller.
                • L-carnitine: Participants were treated with Carnitor brand or generics at a starting dose of 100 mg/kg/day divided BID, or 2 grams twice a day, whichever is smaller.”

                I would check with your MD or ND. You can print out this study and show them the dosing that was used. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/. It is in the methods section.

                This study also states that there were no side effects, but it is a fairly small study. My daughter has never had a reaction to them. If you are concerned you can start slowly and work up to the full dose. They are meant to be used every day to prevent episodes. I don’t think they really work to abort an episode once it is started. For my daughter, she cannot swallow anything during an episode anyway.

                1. Thank you. My son can’t swallow anything either. But if it’s a tiny amount to take a pill, he ca sometimes. His episodes lasts about a week now. Which leads to loss of the vitamin levels in his body.

            2. I provided you with some dosing info below. According to the study that I referenced, the dose for that weight would be 100 mg coQ10 morning and night, and 2 grams (2000 mg) L-carnitine morning and night. Please check with your MD or ND to determine if this dose is right for your son. The paper I provided a link to below has the dosing info.

      2. Hello there,

        I am off to see the Pediatrician tomorrow as my daughter has had her 6th bout of vomiting Feb. 29th and sadly I am anxiously waiting for the next one. I want to make sure my appointment is successful tomorrow and really feel it is very important to get genetic testing to see if my daughter has mitochondrial dysfuncion. I have done so much reading and have been following Dr.Boles and his research quite a bit…I do feel that it if my daughter does have this dysfunction it can direct her therapy towards it. I am just wondering if my request will be accepted – is asking for a genetic test given in these circumstances? I fear if the Pediatrician says no, I am going to feel like I have failed my daughter in trying to figure the cause of CVS or even confirming this diagnosis. I am wondering if you can advise if what I am asking for is reasonable and if there is anything I can do to persuade the Pediatrician and successfully advocate for my 4 year old daughter? Thank you so much.

        1. I am honestly not sure ho much genetic testing is indicated in that situation. I don’t know if genetic testing will always pick up if the mitochondrial dysfunction is present. It may be just as reasonable to treat it as if it is, and see if she responds. That could be something to discuss with the pediatrician. Also the genetic testing is pretty expensive and I’m not sure if it would be covered by insurance.

          1. Thank you so much for getting back to me, I just thought the genetic test may provide a piece of this puzzle. Thank you again for your response.

  12. Hi Cathy, The dose of coQ10 goes by weight, not by age. In the study that Dr. Boles published, the dose that was used was 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller. So, for someone weighing 50 kg, the total daily dose would be 500 mg, and it would be taken as 250 mg in the morning, and 250 mg in the evening. I would check with a medical or naturopathic doctor though to make sure this dose is appropriate for your husband.

  13. Dr. Bridge-Cook, thanks for your very helpful advice! Do you have any thoughts on regular L-Carnitine vs. acetyl L-Carnitine? We had our 5yo daughter on 200mg/2000mg coq10/l-carnitine for months with no results, sadly. I recently switched to acetyl l-carnitine (3 weeks ago), and we are having an episode today. 🙁 Also, any experience with certain brands being better or worse?

  14. She takes 100 mg twice a day (morning and night). According to a 2011 study by Dr. Boles, the dose is according to weight: 10 mg/kg/day, or 200 mg, whichever is smaller. And then divide that total dose in half and take a morning and an evening dose. Hope that makes sense.

  15. Curious, what is the dose of coQ10 your daughter takes daily? My 6 year old suffers from CVS and your articles have been so helpful. Thanks for your time.
    Kathy

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